Friday, November 12, 2010

Update and Thanks.

As of yesterday morning, we were planning on taking Tripp in for his eye surgery and then admitting him into the hospital. This was a decision that Dr. Defusco and I made based on the way Tripp has been feeling and acting. We felt like since he was resistant to the antibiotic that treats pseudomonas and we were only using a topical to treat it in certain areas- that he may have it in other places that aren't getting treated. SO we thought that the only other option was to give him IV antibiotics.

But here's the catch- We wanted to wait and get his blood work results back to see if his WBC was still elevated (indicates infection) before we started him on the IV antibiotics, BUT for him to give him the IV antibiotics, he would need a central line (a catheter that is passed through a vein in the chest to end up in the right atrium of the heart). Which means- more risk for infection and more trauma to his skin. So we were minutes away from going into surgery to do this and the doctor from the Pediatric floor, Dr. Starr, came in to talk to us. We weighed out the pros and cons of doing the central line and IV antibiotics- and there were WAY more cons. Dr. Starr also brought in the infectious disease doctor to take a look at Tripp and his wounds. And we came to the conclusion that if his sores are just draining and not getting red and spreading around the site- then it wasn't time for IV antibiotics. We need to save the IV meds for when we have absolutely NO more options. Plus, if his central line was to get infected- that would go straight into the bloodstream (not good). And also, even if his WBC was high- it could be from an infection in his mouth- which is a WHOLE different story for another day. I think I cried one whole day over his mouth. It's impossible.

But anyway- SO... we literally waited in the pre-op room from 12:30-4:00 trying to decide what to do. And we finally decided- no central line, no IV antibiotics- and if his WBC was high, the infectious disease doctor had another option for oral antibiotics that we could try. So, we were just planning on putting new contacts in and letting Dr. Shah trim some of the tissue that is fusing onto his eyeball. Now, on with the Versed to prepare to take him in. He is hilarious on Versed... bless his heart.

Then we gave him to a "new" anesthesiologist (talk about nerve-racking)... and waited. Well- about 30 minutes later, Dr. Shah calls us to come into the Conference Room (HOLY $#*%... are you kidding me??) He might as well have stabbed my chest, pulled my heart out, and brought IT into the Conference room. Then he told us something that I've been expecting for months... "There's nothing left for me to do." And I totally respect him for this decision. He said that when he started to look into his eyes- he saw that all the areas that they've messed with before (trimmed, cut, sewn membranes) all made granulation tissue and those spots fused to his eyeball. He said that even the contacts aren't an option anymore because they just won't fit because of all the tissue that is fusing onto his eyeballs. He also said that his vision in his left eye is half of the vision in his right. :( He also said that the top layer of his eyeball (membrane) was just loose and completely not connected to his eyeball. But hopefully, by making the decision to just "leave things alone"- the fusing won't get worse, it will stay the same (with intermittent steriod injections). But he will still be dealing with the corneal abrasions. For a corneal specialist to step back- bow out gracefully- and not do anything... is a big deal. And I respect him for that.

I don't regret trying everything that we have already tried- because we didn't know that it would cause more damage at the time. But it's definitley time for us to step back and give his eyes a break. It just stinks that even the contacts (which were our saving grace) aren't an option anymore. So he will just have to live with the abrasions now and hope that they have a chance to heal. Which probably means that he will be on morphine for a while longer, if not forever :( I've said it before, and I will say it again- WE ARE SO BLESSED to have such a wonderful team of doctors for Tripp. I could go on and on about Dr. Defusco and how much she does for us. I feel like she really cares for us and has nothing but Tripps's best interest at heart.

So he left his eyes alone- and we went into the recovery room to see him. And man O man, his eyes looked bad. I think just from the doctor looking around in there, things got swollen and fired up.

Dr. Starr came in and discussed the blood work results with us. His WBC had gone down from 30 to 20 and now to 16. Which is good... but there were two other indicators of inflammation that had gone up. So they don't know what could be causing that. Is it a bacterial infection? his mouth? what? Could me a number of things. So he gave us two more oral antibiotics that will cover most of the things that could be wrong. We will try these and hope for good results.

On a brighter note, I received a beautiful gift today :) A nice blog reader, Vicki, decided she wanted to do something nice for me. So she and a local friend, Diane Rabalais (who helped delivered Tripp) along with the help of lots of other friends sent me a beautiful bouquet of flowers. See?

This beautiful bouquet of flowers definitely made my day:) I feel so blessed to have such wonderful, kind people in my life. Thank you all so much for taking the time out of your hectic lives to do something special for me. I truly appreciate it.

I also want to thank my aunt Mary Threeton who always makes me "random comfort cakes." I may not thank you in a year when I've gained 30 pounds- but right now... I'm LOVING my comfort cake:)

And this one is a beautiful butterfly... See?

Thank you all again for all the love and support you have given us. We are blessed beyond words. I am so amazed at the response that we are getting from for Tripp's fundraiser, and from all the wonderful people who are contacting me and asking what they can do. Honestly, all I can ask for is prayers. Right now, a miracle is the only thing that is going to take Tripp's pain away. Thank you again.

Oh Courtney, my heart just hurts for little Tripp and for you. It is so hard to see our little ones in pain, especially constant pain like Tripp. I was hoping for great news about his eyes and am saddened to hear that there aren't any other options. Well, we serve a BIG God and I'm praying that healing comes for Tripp and all the other EB little ones out there! God is STILL in the business of miracles! I'm claiming one for Tripp!

You are the most gracious person for the way that you speak about the doctors trying to help Tripp. Even when you receive news that you don't want to hear, you have kind words. Your and Tripp's strength and faith is beyond amazing. Our family will continue to think of and pray for y'all often.

Dear Courtney, I was sorry to hear the contacts won't be an option for Tripp. I admire you for respecting the Dr.'s advice. It was good news that his WBC had gone down. I'll be praying that the new antibiotics will help the "little knight". You have so many people that love and care about you and Tripp. The arrangement your friends sent you was beautiful. Take care-

Oh sweet baby! I pray you find some relief. How I wish there was some sort of pain-numbing eye drops that could stop your pain. It sounds like you have an amazing team of doctors watching over you as well as your incredible mama.

Praying is so easy to do. I am praying everyday for Tripp and for you, my friend, Courtney. It is a comfort to be surrounded by Doctors who you just know ~ get it~ and want only what is best for your baby. We have that with Cayden ortho dr. He loves Cayden and his mommy, my daughter Bridget. Please know you are so cared for, from family, friends, doctors, and your blog friends around the world!!! Hugs to you!

Poor little guy. I know that wasn't the news you wanted to hear and my heart hurts for you and Tripp. I will continue to pray for his healing. You continue to amaze me by your strength and the love you have for your son is inspirational. I'm also so glad that people in your area are raising EB awareness. That is awesome.

Heartbreaking news :^( I don't have the words...I can't imagine the pain you are in...and as a grandmother myself,I can't imagine the pain Tripp's grandparents are in. So glad you have a great team of doctors...that means so much. Tripp is in the best hands possible. Sounds like you are making good decisions for his care and are keeping him as pain-free as humanly possible. Sending you,your family, and Tripp a virtual hug ((hug)) Please keep your blog friends updated because we all care so much.

Hi, I have been following your blog for a short time since finding the link on Jonah's page. Could you explain something to me about EB? If a person with EB lacks the "anchors" in their skin, why is any of their skin normal? I look and Tripp and his hands and especially feet don't look too bad and yet they are exposed, then his poor little face is so raw and sore. It seems like all skin would be equally affected, but every child seems different with some seemingly normal areas....Why aren't his hands one giant blister from all the contact?